News

As we anticipate the start of spring next week, I want to take a few minutes to look back and congratulate all ACHA members, advocates, donors, and staff on an amazing Heart Month 2018! You did an outstanding job helping to spread CHD awareness and the importance of lifelong care throughout February by sharing our social postings at a record rate. Combined across all platforms, our postings reached an astounding 8 million people during Heart Month, and our Facebook, Twitter and Instagram followers increased by more than 1,000 people. Way to go!

As you read this, nearly 200 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2018 Congenital Heart Legislative Conference. They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD). This includes recruitment of co-sponsors in the Senate for the reintroduced Congenital Heart Futures Reauthorization Act of 2017.

We applaud the House of Representatives for passage of the Congenital Heart Futures Reauthorization Act (CHFRA), H.R. 1222.

Congenital heart defects are the most prevalent category of birth defects, affecting nearly 1 in 100 babies; more than five percent will not live to see their first birthday, and those who receive successful intervention are not cured. Children and adults with congenital heart disease (CHD) require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death.

February is Heart Month and we’re asking all of you to help us spread awareness of CHD and lifelong care by sharing the items we post on our social media networks. Many of you do this already throughout the year, but we are asking ALL our members to take note of our posts this month and pass them on. You may have noticed that our theme for this year’s Heart Month is Empowerment: Taking Control of your CHD, which we hope resonates with all of you.

As we begin 2018 and prepare to face new opportunities and new challenges, I want to thank all of you for your continued commitment to ACHA. Your dedication and support enabled us to achieve strong growth in 2017.

As part of ACHA's new Vision 2025, our guide for the future, we are excited to announce our new strategic plan for 2018-2020. ACHA recognizes the value in and responsibility for creating a meaningful multi-year strategic plan that will guide us to be the foremost resource for the CHD community. We worked to create a clear outcome by engaging our most critical stakeholders on this important journey.

As a non-profit organization, one of the biggest things ACHA depends on is funding consistency, so that we can continue to serve the growing CHD community. Our Congenital Heart Champions are a special group of supporters who are so passionate about our mission that they donate monthly. Join this growing circle bysigning uptoday.

The House of Representatives and Senate are each working on tax reform legislation. If enacted, the bills would make a number of significant changes to our nation’s tax code and some of these policies would impact health care.

Regardless of the implications of the other parts of the bill, these provisions will potentially increase costs and decrease access for people with CHDs and other high-cost, chronic conditions. We need everyone to call their Senators and Representative and express our concerns about the tax reform proposals.

Yesterday, President Trump signed an executive order that will affect health insurance coverage for Americans. He seeks to increase competition by facilitating access to association health plans (small businesses can join together to purchase insurance coverage through associations), short-term limited duration insurance products (plans that last less than a year), and health reimbursement arrangements (employers can give employees money to purchase insurance rather than provide it directly). Nothing is changing immediately; rather, President Trump has directed several government agencies to draft regulations to implement these new policies over the next 60 to 120 days.

Next week the Senate is expected to take up the ACA repeal plan introduced by Senators Graham (R-SC), Cassidy (R-LA), Heller (R-NV) and Johnson (R-WI). The plan (being referred to as Graham-Cassidy-Heller-Johnson or Graham-Cassidy) is just as harmful to patient protections as previous legislation considered in Congress this year. Graham-Cassidy would make significant changes to the individual insurance markets and the funding formula for Medicaid.

We need all CHD advocates to contact their members one more time before the Senate votes on the proposal next week. While some provisions of Graham-Cassidy differ from the other ACA repeal proposals, this bill, like those that preceded it, invalidates the patient protections important to adults with CHDs.